"Cancer Patients Deciding on Research Questions? Finally!"

More than 30 years ago, women with breast cancer began to voice their concerns about the state of cancer research in the public sphere. I was part of this movement, and one of our foremost complaints was that cancer researchers were not addressing many of the questions patients wanted answered. Fortunately, things have changed since then. This became particularly evident to me last August, when cancer researcher Bishal Gyawali sent me a call for applications from the Marathon of Hope Cancer Centres Network (MOHCCN)’s Patient Voices in Research initiative and invited me to join his research team at Queen’s University. I was amazed—not only was the awards program designed by cancer patients, but patients would decide which applications to fund!  

I began to reflect on the long and sometimes bumpy road patients have travelled to reach this point. My own travels on that road began in 1991, when I co-founded Canada’s first breast cancer advocacy group. That fall, I was one of nine patients who testified at parliamentary hearings on breast cancer headed by an all-female group of MPs on the Status of Women Sub-committee.  

After each meeting on Parliament Hill, this group of patients began to connect to talk about our experiences. It became clear that we had questions and practical concerns that the cancer research community wasn’t addressing. While we made that point in meeting after meeting, one researcher expressed the prevailing opinion at the time, telling the sub-committee he didn’t see how the public could have input into research projects. 

Luckily, the MPs challenged this view. Their report, based on nine months of testimony, expressed concerns about “a type of closed circle" of researchers. They said it was outdated, in 1992, “to adopt an approach that suggests that only physicians and scientists are equipped and qualified to evaluate the efficacy of research proposals and to make policy decisions on the nature and direction of cancer research.” 

The following year, Health Canada sponsored a landmark national policy forum on breast cancer, where patients participated in round-table discussions with cancer researchers, physicians, nurses, and policy makers. One outcome of the Forum was a dedicated breast cancer research fund, which included funding partners from various sectors and would be overseen by a management committee. Given the involvement of patients at the hearings and the Forum, patients naturally expected to have a place on this oversight committee. But when the health minister announced the members, none were identified as having breast cancer. Under questioning, he responded that the committee did include patients, but they would not be identified. Astonished, we asked how survivors could feel represented if we did not know who was representing us?  

Months of meetings followed between advocates and officials from the funding bodies, at which patients made the case for open representation. Physicians countered that their obligation to maintain patient confidentiality meant they couldn’t say who on the committee had cancer. Patient advocates, by contrast, saw our role as a public one in which we voluntarily self-identified as patients. This hurdle was eventually cleared, and a newly created national patients’ network became a full partner in the research alliance. 

It was a significant milestone for patient advocacy, but there was still a lot to be done. When it came to deciding on what research projects should be funded, many researchers still argued that including patients threatened their autonomy and the peer review process. Eventually, the fund included lay participants on all four of its decision-making structures, though the results were not without controversy. When the Canadian Medical Association Journal (CMAJ) published a series of six commissioned papers to evaluate alternative therapies for cancer and a patient’s guide to making decisions about such therapies, two researchers asked, “What should we look for next? The CMAJ guide to Canadian witch doctors?” The journal’s editor responded that evaluations of alternative therapies were needed, and that the public should help set research agendas: “It is their disease and their money.”  

We’ve come a long way in 30 years. Cancer research organizations, including the Canadian Cancer Society and Ovarian Cancer Canada, have begun to experiment with models of collaboration that engage patients in framing research questions and adjudicating research proposals. As patient involvement in research becomes mainstream, patients have documented how these initiatives can “go wrong,” leaving patient participants feeling patronized or marginalized by professional members of a research team. The approach of the Marathon of Hope Cancer Centres Network’s Patient Voices in Research initiative, in which patients developed the themes for a research agenda and selected the successful applications, goes beyond having patients as research partners: it affords them full control.  

This program feels like a watershed moment in Canadian cancer research more than 30 years in the making. I’m excited to be a coinvestigator on one of the first applications to receive funding from the Patient Voices in Research program. Dr. Gyawali’s team will document and seek reasons for disparities in drug access across jurisdictions in Canada and internationally. The results, I expect – along with the other funded projects – will strongly support the value of this initiative, advancing research that directly impacts the lives of patients, while valuing and respecting their expertise.